High Phosphorus

[darin]

I’ve been on a PD cycler for 4 years and recently haven’t been able to control my phosphorus, despite carefully watching what I eat.

I’m 6 feet tall and weigh 150 lbs (male), and have PKD so about 17 lbs is due to my kidneys alone.  I’m very thin.

My phos has been running 6.4 to 7.4 for the past number of months.  I take 3 renvela per meal and 1 or 2 with snacks.

I do 4 cycles of 1.5L 1.25%, 1 hour 50 mins per dwell.  No day full as I still make urine.

My parathyroid is about 550. 

My BUN runs in the 90’s and creatinine about 13.

All other numbers are excellent.

My nutritionist wants me eating about 70-90 grams of protein a day, which is really hard to do.  I probably average about 60-70 grams. 

I don’t eat out and prepare all my food myself, don’t drink milk or eat cheese. 

I consume about 1300 calories a day, whereas my nutritional study wants me at 2,000 but that’s extremely difficult for me as there’s not much room to eat food due to my kidneys squishing my stomach.

My nurse always reacts in horror at my phos numbers and then tells me to eat more protein lol.

I get most of my protein from baked chicken.

Typical daily diet:

- breakfast:  bowl of corn based cereal with low phos almond milk. Maybe a piece of fruit.  Sometimes 1/8 cup of Greek yogurt too.

Lunch:  3-4 ounces of baked chicken. 
1 Apple
1-2 slices of bread
Home made blueberry muffin

Dinner:  4 ounces of baked meat
Bread or rice
Green veggies
Piece of home made cake

Bedtime snack:  slice of bread with a bit of peanut butter.

Is it unusual for phosphorus to be that high, given my diet?

I do not drink any soda.  Mostly water with some berry juice mixed in, or hibiscus iced tea.

Thanks

[Paul]

The only really bad thing on that menu is peanut butter (I'm banned all peanut products by my dietitian). Although I've never heard of "low phos almond milk", I was under the impression that the only non-dairy milk we could drink was rice milk, nut and soya milks being very bad.

I'll be honest with you, I an nowhere near as good as you, and my phosphate is always very good, so no idea why you have such a high phosphate level.

[darin]

Low phos almond milk means I don’t use the kind that adds calcium phosphate

Yes peanut butter is bad but it’s all about the quantity and trade off of course.

Thanks for your answer as I’ve been under the impression my diet shouldn’t yield that kind of result.

Overall, I don’t each much period and I rarely snack.

[Wat76]

I have a transplant now , but my phos was always high with or without binders.

[darin]

I have a transplant now , but my phos was always high with or without binders.

Awesome, glad you got it.  I have about 1 more year to wait. 

Do you still feel good despite taking the anti rejection meds?

[PrimeTimer]

My husband finally settled on rice milk made by Rice Dream. His stomach is picky and this is the only milk that agrees with him and one that he actually likes the taste of. To help with his protein he has a 3 egg omelet for breakfast with 2 pieces of white toast. No cereal of any kind -ever. The eggs have a little potassium but loaded with protein. He watches his overall daily intake on stuff that is outlawed for kidney people and if he was good most the day then he has a little of something, but always careful to not overload on anything "bad". I recently treated him to some sugar wafer cookies and well, that was a mistake. He took enough Insulin to cover the sugar but his stomach protested.. Also, btw, meat has a little phosphorous in it too altho depending on what kind you eat, meat also have some very important "good" stuff. We eat lean hamburger or beef but not every day. Never any packaged meat aka lunchmeats. 


Edit: meant to add that he has his omelets with red, green and yellow diced bell peppers and onion that have been sautéed in canola oil with a sprinkle of parsley flakes, onion powder, black pepper and red pepper flakes. He loves it and never tires of it so that makes it easy on me. And I'm no cook...I watch chefs on youtube to learn.

[Marilee]

Hi Darin,

I posted just about everything I could on phosphorus at this website: https://mylowphosdiet.wordpress.com/. There might be something in there that's new or useful to you. We were able to get his numbers from 6.6 to 5.4 following my blog's guidelines.

Since writing that blog, hubby's kidney function declined further (just about zero now), and we noticed that the phosphorus numbers really plummeted once he
A) Included the day dwell (according to the PD nurse, the day dwell has more time to exchange the larger molecules such as phosphorus) and
B) Switched to Sevelamer as his binder.

Hope that helps!

Marilee